G had a follow up ultrasound to check on his kidneys because of the hydronephrosis. The dilation has gotten worse. The nephrologist ordered a mag 3 lasix renogram and it is scheduled for next Thursday. The test can be 2-3 hours long and he will have a catheter and an IV. I am not at all looking forward to this. I keep telling myself that if his kidneys were starting to fail, we would be experiencing signs of that. But he is such a happy baby and has no symptoms or anything. The best case scenario is that there is some type of blockage or something that can be fixed. I am really overwhelmed and scared about the whole thing. Anyone have experience with this test or with hydronephrosis/pelviectasis (they use both of those words when talking about what exactly is going on with his kidneys)?
Have they done a urine or blood test to check for kidney failure? How do his ureters look? Do they have fluid as well or is it just the kidneys? I am not familiar with that particular test but I do have a family history of kidney issues and we are dealing with kidney issues with DS2 as well. I'm sorry you have to go through all of this. I hope the test goes well and you can get some answers.
Post by wineallthetime on Jul 20, 2016 6:44:09 GMT -5
I'm so sorry you're going through this. How stressful. I'll be thinking about you guys. Please keep us updated and know we are here to chat if you need to.
Have they done a urine or blood test to check for kidney failure? How do his ureters look? Do they have fluid as well or is it just the kidneys? I am not familiar with that particular test but I do have a family history of kidney issues and we are dealing with kidney issues with DS2 as well. I'm sorry you have to go through all of this. I hope the test goes well and you can get some answers.
They did a urine test recently because he had a UTI. He's just about finished with the antibiotics for that. At his 20 week ultrasound they said his ureters were dilated. They continued monitoring throughout the pregnancy and it continued to look more dilated. I was sent to high risk and had twice weekly NST until I was induced at 35 weeks. The high risk OB was concerned that his ureters would burst. Once he was out they did an ultrasound and said the pelvis of his kidneys were both dilated. I can't remember now what they were dilated to at birth. We saw a nephrologist and he had a VCUG done. The doctor that did that test said he thought he saw a possible obstruction between the ureter and where it enters the bladder, which would cause some urine to back up into the kidneys and would then cause dilation. But the nephrologist and a urologist said that there was no sign of reflux. So we just waited and then had this follow up ultrasound last week. Meanwhile he ended up with a UTI and was miserable. He's much better now. It's frustrating to have different people saying different things. I'm just scared. I have a bad feeling about it, but I tend to be overly worried about things all the time. I'm trying not to think the worst.
My DD had kidney issues from birth to age 5 when she had surgery to correct it. Hers was actually an issue with her urethers that caused urine to back up to her kidneys.
As Scotty said, have they done testing to check for kidney failure? No experience with the test you mentioned. DD had ultrasounds and VCUGs regularly for monitoring.
I'll be thinking of you and baby G. Keep us posted.
They should be able to do a urine test and blood test to determine % of function. We just did that with M because only one kidney is growing but it turned out they are both still functioning.
I agree that hearing different things from different doctors is incredibly frustrating. We have received a different diagnosis at each appointment, but part of that is because the kidneys change so quickly when they are little. I trust my nephrologist more than any other doctor we have seen and he seems most knowledgeable about kidney issues (more than the urologist).
I'm curious why they didn't put your little guy on a low dose antibiotic knowing he was at such high risk for UTI. I'm obviously not a doctor, but I've always heard of antibiotics when kidney issues are found prenatally.
I really hope this test gives you the answers you need. Is there a chance he could still outgrown it? You guys are in my thoughts and prayers.
They should be able to do a urine test and blood test to determine % of function. We just did that with M because only one kidney is growing but it turned out they are both still functioning.
I agree that hearing different things from different doctors is incredibly frustrating. We have received a different diagnosis at each appointment, but part of that is because the kidneys change so quickly when they are little. I trust my nephrologist more than any other doctor we have seen and he seems most knowledgeable about kidney issues (more than the urologist).
I'm curious why they didn't put your little guy on a low dose antibiotic knowing he was at such high risk for UTI. I'm obviously not a doctor, but I've always heard of antibiotics when kidney issues are found prenatally.
I really hope this test gives you the answers you need. Is there a chance he could still outgrown it? You guys are in my thoughts and prayers.
He was on the antibiotics until the nephrologist ruled out reflux. He hasn't said whether we need to go back to antibiotics prophylactically.
I'm sorry that you are still dealing with this limbo. How frustrating to still not have answers. You are doing a great job staying positive. Prayers for you and G!
Post by URMySunshine77 on Jul 20, 2016 13:14:44 GMT -5
I'm also sorry that so many questions are up in the air. Sending you support and positive energy that there is a simple correction if anything is wrong. Hugs
Update: I questioned the nephrologist about testing kidney function and he has put the orders in for lab work. We will probably take him Monday for labs and then Thursday is the renal scan. I am really worried.
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